getting back to 'normal'

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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getting back to 'normal'

Postby eleven on September 27th, 2004, 12:58 pm

Just wanted to post my own personal story with bfs. I am new to the group.
I have been twitching since late Dec 2003. I had a flu-like virus at Christmas that left me very worn down. I immediately began to notice something weird going on with my body. In the days to follow, I noticed paresthesia behind my ears. When I first went to the doctor, I presented with this abnormal feeling. After running some blood work, he decided that I was a very healthy 23 year old with an odd manifestation of stress. Given, I do have a semi-high-stress life, and I have always been a very anxious person. During the following days, the abnormal feeling continued behind my ears and actually spread and intensified. Then, one morning I woke up to twitches in my side, on my forehead, among other places. I went back to my GP. He was now more concerned, and decided to schedule me for an MRI and MRA of my head. These tests came back normal.
Of course, it was during this time that I searched the internet for my symptoms. And low and behold wonder what sort of search hits I got.
Not to mention that my husband is in medical school, and I had all of his lovely medical books beckoning.

Moving on... I started having buzzing, entire body vibrations, and more paresthesia on my abdomen, on my legs. You name it, and I think I experienced it. My tongue burned, it felt heavy. My throat felt tight - then it would get sore. I had throat spasms - very painful! I had stomach cramps, and would vomit in the morning when my anxiety was highest. The right side of my face felt tight like there was a clay mask on it. I felt so tired all the time. My twitches spread everywhere - feet, ankles, legs, butt, back, breasts, tongue, nose, scalp, EVERYWHERE! My twitches were repetitive, singular, pops, a rate of about 10 per minute. My GP put me on Ativan. (It helped me sleep, but caused my depression about all of this to increase)

Around this time I got into see my neurologist, who after a thorough physical exam and oral history told me that I was suffering from anxiety and physically manifesting mental symptoms. However, he agreed to an EMG for the sake of my sanity. During the 2 months of waiting for my EMG, I continued to experience a constant barrage of symptoms. (I took a leave from my job, with my GP's approval). My right bicep ached for days, and fatigued much too quickly. My entire body would jerk. My muscles would have spontaneous shooting pains. I was a wreck.
About this time I discovered this website, which gave me much comfort (thanks :) ). In talking to my med-student husband about BFS; he told me that he had never heard of anything like that. He thought that I had Lyme disease. (Which I tested negative for).

When I went in for my EMG, I brought up BFS to my neuro. He acknowledged that it was indeed a syndrome, and that my continuous persistent fasciculations probably constituted a BFS diagnosis. After a clean EMG and nerve conduction study, I finally accepted the fact that maybe everything that I was experiencing was truly benign. My neuro said that my BFS was probably a post-viral reaction, and that most of my other crazy symptoms like buzzing, vibrating, burning, tightness were caused by my anxiety and breakdown of my coping mechanisms. He forcefully asserted that I did NOT have a neuromuscular disease. He also told me that I had "medical student disease" (that preys upon those with high levels of suggestibility) because I was around the constant influx of medical information from my husband.

My last Neuro appointment was in April. He told me to call him anytime with questions. He said the fascics may or may not go away over time. He said that my muscles are over-charged and could be prone to fatigue.

It has been a few months now, I am still twitching, but not nearly as profusely. And most of my other symptoms have dissipated. I do still have muscle fatigue, but nothing I can't handle. I feel mostly normal again, and I have higher threshold tolerances for twitching. I have been taking Lexapro for my anxiety, which has been great. I now accept the fact that I have BFS. My tongue twitched yesterday, and it didn’t bother me a bit. :wink: I decided to finally join because I feel like I can now contribute optimistic postings.
The eagle never lost so much time as when he submitted to learn of the crow -William Blake
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Postby amy_twitch on September 27th, 2004, 1:20 pm

Awesome post! Good to have you here. It's always great to read about people's 'full-circle' stories. Thanks for bringing support to the board.

What type of medicine does your husband want to pursue? Maybe he'll look further into 'BFS' and come up with some new ideas for us. Interesting that he pointed out lyme. There are a couple people on this board who continue to educate about lyme, as it is a possibility for some. Lots of us seem to have had some type of 'virus' prior to the onset of our twitching as well. I had flu-like aches and a pretty bad headache for 2 weeks...followed by tingling all over....followed by buzzing and twitching. Here I am one year later, and the twitching has subsided a lot....though I do get a few hot-spots that pop up occasionally. My left hamstring is going right now--but it doesn't bother me a bit.

Look forward to reading more of your posts!

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Postby Stephanie on September 27th, 2004, 1:42 pm

Great post. Always makes me feel better to hear other people who twitch ALL OVER, ALL THE TIME! Glad you're doing ok--hopefully I will too (I'm almost there).
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Joined: June 28th, 2004, 8:36 pm

Re: getting back to 'normal'

Postby LeeNC on September 27th, 2004, 6:43 pm

eleven wrote:... In the days to follow, I noticed paresthesia behind my ears. When I first went to the doctor, I presented with this abnormal feeling. ... Then, one morning I woke up to twitches in my side, on my forehead, among other places. ... My tongue burned, it felt heavy. My throat felt tight - then it would get sore. ... The right side of my face felt tight like there was a clay mask on it. ...

A lot of what you described sounds to me like Bell's Palsy, which doctors believe is usually due to herpes simplex. Bell's Palsy, for those who may not know, is another "benign" thing, except that it typically shows up as a temporary paralysis of half one's face, lasting weeks. My best friend just got it, and the way it started for her was that she thought she'd burned her taste buds on some hot tea.

One reason I am especially interested in your symptoms: A good friend and I did a nature walk in June and both got a bazillion chigger bites and ticks. I got swollen glands, a day of exhaustion, then BFS. And she got Bell's Palsy. Could that be coincidence, or were both our conditions triggered by bug bites? My theory is that herpes simplex (or a close relative) virus was somehow activated in both of us from the bug bites. But really I don't know...just another person guessing.

Anyway, we're glad you're here, and of course we're glad to hear you are seeing some improvement in your health!

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Postby Ava on September 27th, 2004, 9:38 pm

Ditto the great post messages! Your experience sounds a lot like mine. Glad you are in such a good state about the BFS, lately I am too.

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